With modern care, patients affected by Chronic Granulomatous Disease (CGD) are living into adult life, and doctors think that some patients with CGD have a normal life expectancy.7 Many adults with CGD have jobs, get married, and have children.
Like everyone else, adults with CGD need to feel a sense of accomplishment and purpose and contribute to the world around them. No matter how old you were when you were diagnosed, it is important for you to continue learning about your condition and to choose healthcare providers with whom you can work comfortably.
While the majority of patients with CGD have been diagnosed as young children and are used to living with the condition, there are still some important things to keep in mind for adults with CGD to keep in mind.
Continue educating yourself about CGD. Self-education is a continual process, and IDF provides a wealth of information for you. Ongoing research frequently provides new information about CGD and their treatment, so it is important to review existing information, to register for IDF communications and mailings at www.primaryimmune.org/get-connected, and to continue asking questions of your healthcare providers.
Choose a quality healthcare team. While parents take the lead for young CGD patients, it is essential for adults with CGD to choose a healthcare provider who understands your health problems. Seek out an immunologist who has experience in treating CGD and make sure that you feel comfortable with that person. They should welcome and encourage your questions and input. Patients who are involved in their own healthcare decisions tend to do better than those who are not as involved, so it is in your best interest to find healthcare providers who consider you a partner in the treatment process. Although many healthcare providers are pressed for time, most of them appreciate patients who are curious, willing to learn about their health issues and treatments, and want to collaborate in their care. IDF can help you locate a specialist in your area, click here or call 800-296-4433.
Build strong social relationships. It is particularly important to build and maintain strong relationships, both inside and outside the family, and to remain connected socially. Schedule quality family time. Meet friends for lunch or coffee. Volunteer your time for a worthy cause. Engaging in activities outside of managing your health will ultimately benefit your health. It is also important to learn to ask for and accept help from the people in your life. Family members and friends often want to help and contribute to your sense of wellbeing. They can be a valuable resource for you.
Connect with others like you. Because it is such a rare condition, individuals living with CGD can feel alone in the world at times. Meeting other individuals who live with CGD is a way to both gather knowledge and acquire an important sense of connection with others who share your experience. IDF can put you in touch with another patient through its peer support program and can provide information about regular educational meeting opportunities that occur at various regional and national locations.
Maintain a positive attitude. The vast majority of adults with CGD are leading productive lives. Consider the gifts and abilities you have and use them to contribute to the world and people around you.
Consider your family as your team. You and your family must work together to remain strong and caring, and communication is the key. Your family members should share their thoughts and feelings with each other on a regular basis. One of the most effective ways to do this is to share a daily meal together. This is a great opportunity to share your experiences, plan family activities and outings, and reminisce about good times spent together. In addition, everyone must make a contribution to the team. Everyone needs to feel a sense of accomplishment and to feel good about themselves and their contributions. In some cases, if you are dealing with an infection or illness, you may be no longer able to work or complete other tasks for which you have been previously responsible within the family. You need to discuss the changes in your roles or responsibilities and work with your family members.
It is very common for patients to take out their frustrations on family members when they are feeling overwhelmed, angry or stressed. Remind yourself that you may be feeling upset about your situation and are not necessarily angry with other family members. At times, it is important to share that thought with your family. Consider what other family members need or want as well. Usually you will find that it is exactly what we all want: love, understanding and appreciation.
If you and your partner consider growing your family, it is important to understand the genetic implications of CGD. Your immunologist or a genetic counselor can address these questions and concerns. Refer to the inheritance section of IDF’s website for more detailed information.
Not everyone with CGD is affected in the same way. It is typical for patients to experience increased stress as they face unexpected illness, hospitalizations and missed work. They may simply be unable to manage their usual responsibilities and may require the help of others while they recuperate. Recognizing and managing this psychological stress can be challenging, but it is important to identify stress and how it affects your physical and emotional health, as well as to develop effective ways of coping.
Keep in mind a variety of activities that help you manage stress. Remember that you may not be as efficient when you are stressed or overwhelmed with fatigue, so it is of no benefit to push yourself at those times. Make time for rest and relaxation. Take a nap, learn how to meditate or use deep breathing or other relaxation exercises. Make time to read for pleasure or enjoy music. Exercise is also an excellent way to relieve stress, whether you walk, ride a bike or engage in a more strenuous workout. Know the kinds of stress-reducing activities that are helpful to you and best suited to your lifestyle and physical abilities.
Many individuals benefit from speaking with a mental health professional, such as a psychiatrist, a clinical psychologist, a social worker or a pastoral counselor. If you are wondering how you will know when it is time to seek help, consider the following suggestions:
- When your feelings and/or your behavior regularly interfere with your ability to function on the job, at home or as a member of your family.
- If you are trying to move forward but feel stuck or if you feel uncomfortable to the point that you feel a need to do something as soon as possible.
- When your family members become overwhelmed, unable to manage or struggle to manage everyday stress or when relationships seem to be falling apart.
The first step in seeking help is to contact your insurance company to review your mental health coverage and benefits. You will want to know any in- and out-of-network deductibles and co-pays, and if there are any restrictions on the type of professionals you can see. Your insurance company can usually provide you with a list of mental health professionals in your area who are participating providers with your plan. Another way to identify a potential therapist is to get a recommendation from someone you trust, like a family member, friend, your healthcare provider or clergy. In addition, most state psychological associations or state social work associations have referral services to help you identify a suitable professional.
Employment and Health Insurance
Adult patients with CGD, in choosing a job or career, must think in terms of ones that are suitable for their condition. It is important to consider factors like time and stress, and how they may affect your health. Also, it’s best to avoid certain occupations that involve exposure to materials that can harbor fungi, such landscaping or forest conservation.
In seeking employment, be aware that there are laws against discriminating against an applicant based on a chronic health condition. However, that does not mean that the laws are easy to enforce. You may want to familiarize yourself with these laws.
Patients with CGD work in all kinds of jobs. For many patients, the health insurance coverage associated with employment is the most problematic. Small employers, for instance, may not be able to cover you, so choosing an employer who can provide adequate health insurance may be important while considering careers. New Health Insurance Portability and Accountability Act of 1996 (HIPAA) legislation has improved the ability to transfer insurance coverage from job to job once you are insured. The Family Medical Leave Act (FMLA) also ensures continued employment in the face of prolonged work absences due to illness. Disability in this population is not common but can happen. You need to be prepared should this occur.
Health insurance is a concern that all people with CGD must face. Decisions regarding school or employment may be affected by insurance coverage. This issue cannot be taken lightly by anyone with a pre-existing condition. If you allow your insurance to lapse or do not look into the options that exist before coverage terminates, your ability to qualify for insurance may be seriously jeopardized. It is important for an engaged or married couple to face the issue of health insurance realistically and understand its importance in career decisions.
It is also essential that you understand how the Affordable Care Act (ACA) of 2010, also known as healthcare reform, affects you. The law puts in place strong consumer protections and provides new coverage options. Click here to visit the IDF Patient Insurance Center.
Coordinating Your Healthcare and Being Your Own Healthcare Advocate
It is essential for you learn how to coordinate your healthcare and become your own healthcare advocate by establishing a relationship with your healthcare providers.
Ways to help you communicate with your healthcare providers so you can be heard and understood:
- Treat each healthcare appointment as if it is an important meeting. Bring an “agenda” with questions and take notes.
- Be prepared. Plan ahead and do your homework.
- Get any necessary insurance authorizations ahead of time. This will help you to keep organizational noise down.
- Bring your medical information to your visit. You can keep a journal, create a folder, make computer documents, or use the IDF ePHR, an online personal health record (www.idfePHR.org). However you choose to document your healthcare, make sure to include:
- A current list of providers caring for you along with their accurate addresses and phone numbers
- The chronology of important events, specifically noting types of treatment and therapy, changes in therapy and subsequent responses to that therapy, surgeries and/or hospitalizations
- A list of your current medications
- Allergies to medications
- An immunization record
- Current insurance information
- Explanation of benefits records can be kept in the journal or separately but should be periodically reviewed for accuracy
Forget your stereotypes about your providers. With their white coats and degrees on the wall, they seem like authority figures. Remember, healthcare providers are people, just like you, with a job to do. Their job is to help you find a way to stay as healthy as possible. It is important to find providers with whom you can be yourself. They are your partners in your healthcare.
Our attitudes or inhibitions can hamper communication by creating psychological noise. Your relationships with your healthcare providers are intimate ones. It is their job to help you, not to judge you. If you did not follow their advice, did not adhere to the treatment plan, or did not buy the medicine because your insurance did not cover it and you could not afford it, tell them. How else will they know if what they thought should work was effective?
Be honest. Do not be afraid to talk about what goes on in your bathroom or your bedroom. If you smoke, drink, take illicit drugs, use herbs or see alternative care providers, say so. Remember, your healthcare information is private and law protects that privacy. Whatever you do, do not be afraid to tell the truth.
Advocate for yourself. No one knows how much your disease affects your life better than you do. No one understands the changes you have to make every day to deal with your treatment as you do. To live your life to the fullest, you need to be your own healthcare advocate. How you can advocate for yourself:
- Inquire about what can be done to improve your overall health. Consider such things as diet, physical activity, sleep and social activities.
- In terms of your school or work, maintain consistent communication with your school and/or your employer in the event that you miss days and understand their policies and procedures.
- Know your insurance policy and let your provider know if there are any changes—especially if those changes mean you have to change providers or your therapy and medications will no longer be covered.
- Build positive relationships with your providers. Know whom to call when.
- Ask about resources for further information at the local, state and national level.
- Connect with IDF for additional resources. Call 800-296-4433.
Remember, communication is how we all relate to each other. Think about the things that you need to stay healthy. Think about how you can best communicate those needs. Identify and silence as much of the noise around your communication as you can. Apply the aforementioned principles. By doing this you will have some of the tools you need to successfully coordinate your healthcare and be your own advocate.
TranscendRare – ACTIMMUNE Assistance Program
For patients receiving ACTIMMUNE (Interferon gamma-1b), Horizon Pharma has the TranscendRare Program, which offers patients on ACTIMMUNE, their families and healthcare providers one-stop convenient access to support services and to Program Coordinators who are available to answer questions about the Co-Pay Assistance Program, the Patient Assistance Program and other patient support resources. For more information, call 877-305-7704.
To learn more about programs and resources for adults, contact IDF via Ask IDF or 800-296-4433.
- IDF Friends
Adults can connect with others through IDF Friends, the private social community created exclusively for patients and family members living with PI.
Source: Immune Deficiency Foundation Patient & Family Handbook for Primary Immunodeficiency Diseases FIFTH EDITION Copyright 2013 by Immune Deficiency Foundation, USA. This page contains general medical information which cannot be applied safely to any individual case. Medical knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical advice.